The boys and I took advantage of an event with PIC while John was working very long hours. Off to Hope Hospice in Fort Myers for pizza and art.
Surely all of you are jealous that we spend our social time in a hospice conference room! It is not exactly social since all of the other families attending spoke Spanish only, if they did speak English they were not going to share it with me. No, not exactly the outings I envisioned with my children. Nonetheless, I am grateful. I do confess I may not make the trip again unless necessary before the evaporator is fixed on the jeep. OK, I'm actually about to make it again and farther for Riley's PT and a wheelchair repair. The boys made no complaints as the sweat dripped off them and a thunderstorm threatened to soak us all. The relief of having someone capable feed Riley for just one meal motivated me to make the drive.
As I ate quietly and watched the boys, I contemplated how important even these few moments are to me. Without having these few moments of occasional respite somewhere beyond the parents spelling each other helps maintain sanity.
Riley was so happy to be with Miss Debbie P. for awhile he laughed heartily for several minutes. A group of FGCU students, belonging to P.A.T.C.H. (Project Art Therapy For Childrens Health, coaxed Ronan to take on a paint project. "What shall we do?" asked Juan. "A father's day card," Ronan answered. Knowing he already had made a card for Daddy I was curious. Soon it took shape and receiving some help from Maria he had a wheelchair placed prominently on his artwork. "Riley needs some help with his card," Ronan explained.
Quite the oversized card... so I leave you to fill in the missing letters.
Ronan is always looking out for his family. Such a burden to carry for a six year old. Yet, to Ronan it is not a burden, he is simply fulfilling his place in his family and does it joyfully. There was no resentment, no frustration, no sadness that he had to fill this void for both his brother and his father. I sensed only satisfaction from Ronan. A few feet away Riley laughed again.
No, definitely not the family time I imagined for my future. It has its sadness. But we each find some gratification as well, I still have two magical boys and an amazing husband.
We are all special... by Stacie
Note: P.A.T.C.H. will consider events. For more information contact Marisa at Meschrei@eagle.fgcu.edu. I also have a few pamphlets to share.